Results suggest that it is feasible to translate a research-based caregiver intervention into a packaged program that can be adopted in other settings without the direct involvement of the program initiators.
Background
Among patients with diseases such as HIV, cancer and mental illness, perceived stigma is common and is linked to quality of life (QOL), depression and healthcare seeking behavior. Our clinical experience suggests that stigma is also an important problem among patients with cirrhosis, but no formal studies exist on the topic.
Aims
We aimed to determine the prevalence and consequences of stigma in patients with cirrhosis.
Methods
A survey was developed and mailed to 300 patients with cirrhosis from a variety of etiologies. Among the 149 respondents, stigma was measured using a composite of previously validated scales. Correlates of stigma were measured using an a priori theoretical construct, in order to investigate hypothesized consequences such as impaired social support, depression, and reduction in healthcare seeking behavior.
Results
89% of respondents chose “agree” or “strongly agree” for at least one of the 18 stigma-related questions, indicating they felt stigmatized in at least one aspect of their lives. Patient factors associated with more perceived stigma on multivariable linear regression included younger age (p=0.008), and hepatitis C (p=0.001) or alcohol (p=0.01) as the etiology of liver disease. Patients with higher levels of perceived stigma had less social support (r2=0.898, p<0.001), were less likely to seek medical care (r2=0.108, p<0.001), suffered from more depression (r2=0.17, p<0.001) and had worse QOL (r2=0.175, p<0.001).
Conclusions
Perceived stigma is common among patients with cirrhosis, and is associated with adverse attitudes and behaviors such as decreased healthcare seeking behavior. Healthcare providers need to be aware of these perceptions and their potential impact on patients’ interaction with the medical system.
There have been fundamental changes in the intergenerational family, and yet families continue to be an important part of people's lives. We use the convoy model to describe the factors that influence supportive relations within intergenerational families, beginning with a description of the changing structure of the intergenerational family. We next outline support exchanges, detailing how personal characteristics, especially gender, race, age and socio-economic status, and situational characteristics, in particular family structure and intergenerational context, influence support exchanges. Instrumental and emotional family exchanges are described, with special attention to the unique circumstances of care-giving in intergenerational families. We also examine the importance of recognising differences in the quality of intergenerational relations, again noting the influence of personal and situational characteristics. Variations in support quality, e.g. positive, negative and ambivalent, and its influence on wellbeing are discussed. As families and individuals change, differences emerge at the individual, family and societal levels. We consider the implications of changes and stability in intergenerational relations and make recommendations about how best to envisage and plan future intergenerational family support. Societies with fewer resources as well as individuals and families with diverse individual histories must be innovative and creative in meeting the needs of older people as well as those of all family members.
Caregiving research has not accounted for increasingly diverse and complex marital and family histories of older Americans. The authors examined social relations and care‐specific positive and negative support networks among late‐life remarried wife dementia caregivers (N = 61) to determine associations among network structure, relationship quality with and support received from network members, and global assessments of family and stepfamily disagreement on caregiver well‐being. Own family and friends predominated in the social relations and positive networks. Although over half (54%) of respondents included a stepfamily member in their positive networks, stepchildren comprised the largest group (35%) in the negative networks. Larger negative networks and actively negative interactions were related to greater caregiver burden, and more global disagreement with stepfamily was associated with greater depression and burden. The findings illustrate the complex nature of support and the value of targeted examinations of caregiving support dynamics among late‐life remarried older adults and stepfamilies facing health demands.
Findings illustrate the multiple domains of HRQOL that are affected in individuals providing care for someone with MCI. Moreover, the findings highlight the need for extending support services to MCI caregivers, a group that is typically not offered support services due to the 'less severe' nature of an MCI diagnosis.
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